Glaucoma & dry eye

[Karjade]

I have made an appointment privately with my Consultant (who I have never seen) on Wednesday afternoon. It is costing £130 for a consultation but I will take a list of questions with me (any suggestions which would be the right sort of questions) and then I will take it from there. If he suggests plugs I can get them put in on the NHS. I went to my GP yesterday and he has given me some anti-allergic drops which sting like hell and so far I think they have made my eyes drier. He also told me to take a anti-hystamine every day and use these drops 4 times daily - I feel I am just putting drops in my eyes all day long and it cant be any good for them.

[littlemermaid]

Karjade, If anti-allergy drops are stinging like hell, they are trashing the eye surface. Sorry, but the GPs do not have a clue. This sounds like the 'if it's not infection it must be allergy' GP solution to red eye.

Why is he interfering when you're with a hospital consultant? Are we sure he's read the notes? However, if the GP has doubts about the consultant, this would work to your advantage for referral elsewhere if you want it.

The ophth will want to assess the eyes 'clean' without interference and reaction to random drops. Can you manage on saline or a bland tear substitute till then? Must keep using glaucoma drops, of course.

I shouldn't give a strong opinion on this but this is exactly what our GP did, pointlessly, without knowledge, and contributed to yet more disaster, damage and sensitivity.

Consultant appointment: take a look at Rebecca's advice in DryEyeZone.

Also, I'm thinking you desperately need a local optician - for assessment, monitoring and referral as needed (also you won't have to use the GP). Especially for monitoring the glaucoma: eye pressure, retina (esp if you're tempted to tinker with the glaucoma drops). You want a very good one who works in the hospital service + high street part-time. Ask the consultant for help finding one. If no luck, phone the hospital optometry staff and ask who works 'in the community' for glaucoma monitoring (if they can't do it). That GP is scaring me now!

[abbygirl]

Karjade
I also use a very drying pressure drop and here are afew tips I have found that have helped me. First of all...try not to stress!!! Take it from me..I had major stress about my eyes for over 2 years and it did me no good!! Try not to think ahead of yourself (what COULD happen) and enjoy your good eye days!!! It is an everyday decision to remain calm and happy.

I put Refresh Plus Tears in my eye first thing in the AM, set my timer for 15 minutes, instill my pressure drop..set timer again for 15 and then put a full vial of tears in to really drench my eye. If they are really sore/puffy I hold my cold rice baggies over them afew minutes.

I have found 3 drops that work for me. These range from very "light" drops to the thickest drop and I use these throughout the day. 1. Refresh Plus Sensitive 2. Refresh Optive Sensitive 3. Refresh Celluvisc Sensitive. I always use the Celluvisc before bed. I also use my Onion Goggles while watching TV and in the evening whenever I can.

I hope these tips help you... Stay positive and keep asking questions!! Good luck Wednesday!!

[Karjade]

Thank you both. I have still not taken by glaucoma drops in the day until I see what happens on Wednesday. I am taking the night ones so I am doing something. The last time I went to the hospital about a month ago my eye pressure was 16 (normal pressure is about 12 to 22) so I will wait and see if he can give me an alternative. I have stopped the anti-allergy eye drops and am trying not to mix the dry eye drops. I was taking a bit of this and a bit of that to see which one works better and really mixing them!! The one I am sticking with is Hylo forte but it is so thick it leaves a layer on my eye and I feel I am looking through a net curtain all the time but because I know it is the drops I am not getting anxious. The doctor also wrote a prescription for anxiety and anti-depressants but I have decided not to take them and try to cope with my dry eye on my own. I know I should not be stopping the glaucoma day time drops but it is only six days and it usually takes about three weeks for the drops to get out of the system and by then hopefully I will be taking some different ones. I have normal pressure glaucoma but at the end of the range 19/20 which I was told was probably too high for me but I need to know if it is these drops which are making my eyes dry. What are Onion Goggles? I have never heard of them! I will keep you posted about Wednesday.

[abbygirl]

Hi Karjade
My pressures run anywhere from 13 to 18 and my doctor seems to think that is OK. I only take one drop in one eye in the AM. I do not have any optic nerve damage just high pressure. The drop definately makes a big difference in my eye being dry!! I tried to go without for about a week and my pressure went up to 21 (not good).

I also tried antidepressants and they did help me thru a really rough time with this....if you need help to get yourself straigtened out stress wise...do it!! I was on something for about 3 months and it really did help!! Now I can think more clearly and can actually stop myself from going down the stress path!!

Onion Goggles are actually plastic glasses that are sealed all the way around with a piece of foam. They are made for cooks who chop onions!! I bought mine from a cooking store but I believe Rebecca sells them in her shop. They have been a life saver for me!! Not beautiful by any means but who cares in your own home!!!

[Karjade]

Thank you abbygirl. I am still not sure about the antidepressants. I have to stick with thicker dry eye drops because the more liquid ones like Systane (without preservative) do not work and make my skin around the eyes red and sore and I have been putting E45 cream around my eyes to help with the dry skin. I have a fight with my doctor for him to prescribe Hylo Forte (samples were given to me by the hospital) because it is expensive. He did give me a prescription but boy did I have to fight for it - I can buy them on line from Scope Ophthalmics but why should I! I am going to put in a repeat prescription next week and we will see. The onion goggles seem good and I will look for some. Let you know what happens tomorrow with the consultant.

[Karjade]

I have been to see the consultant which I thought was a waste of time and money - I was so disappointed. I suppose I expected him to sort everything out and wave a magic wand. Instread he is passing me on to a Glaucoma specialist. To tell you you the truth I think I knew more about dry eye than he did - he just said carry on taking Hylo Forte every two hours and my eyes are severely dry. Does anyone know about Sjorgrens? I seem to be going round in circles and getting nowhere and trying to find answers. The consultant said I obviously could not tolerate the glaucoma drops (which of course I already know!!) and I would have to wait a few months to see this glaucoma specialist on the NHS or once again go private and get in within a week. I have no choice but to go private and pay as I cannot go a few months without the glaucoma drops. I cannot live with this anymore and I am feeling very depressed and scared. Where do I go from here?

[littlemermaid]

Can you make it to Oxford Eye Clinic? You would be in the Oxford University hospitals network with the best chance of good internal referrals and more integrated care. It is overloaded, of course, but very organised. Any local optometrist can refer you because your GP sounds as hopeless as the 7 we've seen so far. This doesn't mean you have to give up local care. It means you are a special case and need to consult in tertiary referral, then continue both or either, whatever's best for you.

I'm not seeing it as money wasted because the consultant sets the tone and standard for the clinic and all is thus revealed. You desperately need comfort and local advice, and I'm still thinking your local eye trust charity would be a good contact.

Re access to PF glaucoma drops, if your glaucoma guy is a non-starter or hesitant to use Moorfields contacts, then it's about trying someone else. What type of glaucoma do you have? (you can get copies of the notes from the hospital Medical Records, and all consultants' letters from the GP)

I promise things get better when you have docs in place that you are comfortable working with. Sometimes this means paying one-off when you need them quickly, then continuing in their NHS set-up. Half the battle is coming to terms with this level of *, and then getting the treatment options sorted. Have you got help with this?

[Karjade]

Does the Oxford University specialise in Dry Eyes because I have two things going on the Glaucoma and Dry Eye Syndrome which I feel the drops are definitely causing the dry eyes but I cannot stop them because my pressure will go up and damage the optic nerve even more. I have normal pressure open angle glaucoma but I am not sure how the optic nerve has been damaged if the pressure is within the normal range. Yesterday my eye pressure was 16/17 in both eyes and the normal range is 12 - 22. He says I may have to get it down to about 15 so as not to cause any more damage. I am in a catch 22 situation - I can't stop the drops for the glaucoma and I cannot heal the dry eye unless I stop the glaucoma drops. I will see what this glaucoma specialist can suggest and I will ask her if she can refer me to a dry eye specialist. We do not live too far from Oxford but whether she will refer me is another matter - I know my doctor wouldn't!! Can you tell me what my local eye trust charity is and how they can help? I have just given my eyes a good soaking with Systane drops because hylo forte is so thick and sticky and coats the eye. No I have not got any help with treatment options - I just seem to be passed on to someone else. I have only had dry eyes since March so I am still knew to this and still in the panic stage. I am so trying to keep positive but I haven't got there yet! My poor husband tries to help but gets so confused with all the drops I am taking and when I am talking about glaucoma he thinks I am talking about dry eye and visa versa!!

[littlemermaid]

Karjade, You are doing a great job coming to terms with this and handling it all well. We know this because you are here with us all, and taking charge of your options.

http://www.oxfordradcliffe.nhs.uk/eyehospital/home.aspx Oxford Eye Clinic is at John Radcliffe Hospital, which is part of Oxford University Hospitals NHS Trust. What takes us there is the scope of treatment and quality of staff and access to great equipment and monitoring, not available locally for us. This is a tertiary referral hospital, when local isn't enough, but also serves the greater Oxford area and outside it, which is you. See the consultants listed: anterior segment/surface disease, glaucoma, neuro-ophthalmology. I think a way in if you want to go there is, sorry to say it but needs must when the NHS budget drives, that the anterior segment consultant has failed to test for obvious dry eye causes like Sjogrens even in private practice, and it would be done there. I don't mean this as a judgement, just as a way of getting referral if you want it.

Our GP was awful last time we asked for referral - she said they couldn't do tertiary referral outside the PCT unless we'd been there Private first and got the go-ahead! Hoping your glaucoma specialist gives you good advice. If not, there are other ways...

http://www.eyecaretrust.org.uk/ These guys should know about your local volunteer eye care trust, otherwise it's phoning Patient Liaison for information to see if they have contacts. I will never forget a wonderful kind woman from this trust who came up to us in the eye clinic to find out how we were feeling. When does that ever happen normally? How nice would it be to make contact with other glaucoma patients locally. They would help with local knowledge.

Being passed around is good, because you get lots of opinions, and a feeling of expertise as you yourself learn more. It could well be that Nottingham is the best place for your care, but at least you are in control and know you have other options.

Hopefully, the Glaucoma specialist may have some more cards up her sleeve too. These days I've come to terms with paying to queue-jump according to our needs if we can't get a decent appointment time. It's worth knowing that appointments are not really made according to clinical decisions unless the consultant has specifically said so or they are following a treatment protocol interval; they are more according to what's available on the computer at the point of booking. Consider phoning/emailing the Glaucoma Consultant's NHS secretary and say the Anterior Segment/Cornea Consultant has written to her about the eyedrop damage and you need to be seen fast to resolve the worsening problem with side effects including pain from her prescription eyedrops. She will ask the Glaucoma Consultant what she wants to do about this.

Have you had orthoptics checks yet for your vision to put your mind at rest about the optic nerve monitoring? We've been told some vague rubbish about optic nerves sometimes so it's good to get clarification and reassurance from other doctors and optometrists about what sounds like an off-hand comment by someone for just-in-case checks(?)

[abbygirl]

Karjade,
I know exactly what you are going thru!! You need to stress to the Glaucoma specialist how much pain the pressure drops are causing you. It took lots of convincing to get my doc to listen to me.. The only thing the Glaucoma doc is interested in is preserving your optic nerve!!! I went into my doc with BEET RED eyes and he says "you think that's red!"
It may take some trial and error to find the right mix.
I know this is rough... And I know that this is going to be an ongoing thing for me and it makes me MAD!!! But what good will that get me in the long run?? I hate the way my eyes dictate the way I feel!!! Sorry to vent but I think you understand...

[littlemermaid]

Karjade can phone the Glaucoma Consultant's NHS office right now and report surface damage to preserved eyedrops now she has a Private assessment from the Cornea Consultant. She should see her fast if she reports it to her as a 'drug reaction'. It's a very good idea to give the doc the facts beforehand so she can Google it, whatever, and find preservative-free eyedrops or consider other means of relieving eye pressure, otherwise it's another wasted consultation 'I'll think about it'.

To get the Cornea Consultant private practice letter faster (and it's amazing how slow they are considering how much you've just paid), phone the private practice secretary and ask for it to be faxed through to the Glaucoma Consultant NHS office urgently today because of 'drug reaction pain + eye surface damage' to the Glaucoma Consultant's prescription.

If you queue-jump in private practice, the consultant will say things like 'you shouldn't have to pay for this' and look guilty. And so they should, because they are being paid a lot of money to set up and run an efficient NHS clinic service. Obviously their NHS team are often not happy about this and will be very sympathetic to you but may well be fed up with the boss but staying silent in order to pay the mortgage.

Re disappointment and The Cure, it's a question of finding docs you like to work with, also so you can ask the questions and get the best available treatment. I've realised it is all out there for us, mostly within the NHS, but as Abbygirl says, even once you've made up your dream team, it's getting your Cornea doc to communicate with your Glaucoma doc that's the trick. They do this through the letters, so that's why it's worth really making sure the letters arrive and get acted on fast, and the support staff can sort this out for you - this is why they like working in hospitals.

I wouldn't rule out phoning the Triage Nurse for advice on how to handle their particular clinic systems, especially when they're in a good mood before morning clinic gets hectic, or winding down at the end of clinic maybe 5pm-ish.

Round these times the Consultants are In but looking at individual cases. Before clinic, the Registrars are reading the notes, booking the tests, and asking the Consultant what they want to do about that day's patients. The Glaucoma Consultant could see you before morning clinic if you can emphasise how bad the 'drug reaction' is (we're just calling it this to get you seen fast...).

The key to getting a bit more pro-active and more in control for me has been to start to understand (and sympathise) with the NHS chaos, but to get in touch with when I was a good manager at work and made things happen, and treat this more like a job where things have to get done, whether it's one way or another.

Karjade, I hope once you get things moving with the Glaucoma Consultant and feel more in charge and get good relationships with other NHS eye clinic staff like the optometrists, the panic will subside. The dry eye onset is so recent it could well be a quick fix if she changes the treatment! It's very important you take someone supportive with common sense with you to your consultation so they can take notes and remember to ask the list of questions if needed - Patient Liaison can easily help with this if you can't think of anyone.

[Karjade]

Littlemermaid - thank you so much for all your help. I have an appointment on the 1 June for a field vision test and HRT (scan of the optic nerve and eye) on the NHS so I suppose it would be sensible to wait until I have had this before seeing the Glaucoma specialist. I cannot see how the optic nerve has been damaged when my pressures at the moment are 16/17 so what is causing the damage. I am keeping my fingers crossed that no further damage has been caused or I will start worrying myself sick over that! I really feel the only way forward for me is to pay and I am prepared to do that for peace of mind and the help I desperately need. I will definitely ask about Oxford Radcliffe when I see the specialist because I have to get it sorted. There is an operation you can have to lower the pressure in the eyes so you don't have to take drops but I was told it is a risky operation. Also there is the punctual plugs but I do not know anything about them and the success rate. I am once again mixing all the drops to see what works best for me - some days one works better and another day a different one works better. Abbygirl is so right - my eyes dictate how I am feeling every day and I am so wrapped up in my eyes that nothing else seems to matter. I cannot organise anything because I don't know how my eyes are going to be. I am going to Brighton on the 30 May with a friend and I worrying about whether I will manage it for a whole day with my eyes. Will I ever be normal again?

[abbygirl]

Littlemermaid...you have such good advice for Karjade (everyone really). I am in the States so you have a better handle on the way the doctors operate in the UK.

Karjade-My days fluctuate like mad too..and I have just learned to go with it. Believe me, it took some real soul searching to get to this place of "ok-ness." Once things start to settle down for you and the unknown is cleared up you will start to let go of the panic. I hope you find a compasionate Glaucoma doc..because this aspect of the eye problem is scarey.

I also was offered the pressure surgery (a Trab). I won't get into it but it would have altered my lifestyle significantly and luckily we got my pressures under control with drops. So, I have to feel fortunate for that!!!

I see my regular eye doc this afternoon for a check-up so cross your fingers!! I am due to see my Glaucoma doc too.

[Karjade]

Thank you abbygirl. Hope you get on ok with your eye doc today - let us know. What pressures are your eyes - are they same in the States as they are in the UK. I get mild asthma so that is why I have to have drops three times a day. I was reading something Rebecca put on about the preservative benzalkonium chloride used in glaucoma drops which is toxic to the cornea and both my eye drops have this is - no wonder I have dry eye! She said push for either preservative free or a milder preservative. She thinks it is terrible that people are still using this on a daily basis and it is bad stuff. I will definitely mention this when I go back to the hospital. I do accept taking the glaucoma drops everyday but it is the dry eyes they have caused I cannot accept. I worry that I am not taking the day time glaucoma drops but hopefully I will see someone again soon and then I can get some different drops. Littlemermaid - you are so knowlegeable about everything and I have learnt a lot. Thank you both xx